My Mom has been having trouble with her Peg all week. It kept backing up and spilling out around the opening of the tube. She visited the gastro dr and he tightened it during the week and told her to use alka seltzer when it clogs. Ever since he tightened it it has been causing her discomfort but it was working. Yesterday she had more problems and nothing would go down it. She went in to see the dr again and he decided to replace the tube. After taking out the old one he realized that it was never clogged and that the inner tube to the stomach had fallen out. Therefore he need to do the entire operation over again. She is in so much agony right now! They had to scope her very sore radiated throat. The gastro doc said that her throat was in really bad shape-very raw! She just started making progress with pain (down to 25 mg of Fentanyl) Now she is in agony. Anyone ever hear of such a crazy thing? How could something like this happen? I feel lik we made one step forward 5 steps back! Ugh!!
Tami

Tami
I am so very sorry that your Mom had to go through all this, I never had any problems with my PEG, but I know that nothing in this world is 100% certain. It's good that your Mom has you to look out for her..Moms need that...
Sunshine.. love and hugs
Helen

Hi Tami --

Barry's peg fell out almost two weeks ago, and there were several failures on same day (one j-tube as well). Hopkins thinks they got a bad batch -- the balloons just deflated and the things fell out! Several of the patients were pretty dependent ontheir tubes and these had to have priority to be reinserted, trying to do within 24 hours to use same opening -- this was done but involved (as with your mom) re-doing the endoscopy etc. although no additional surgical opening.

Docs and nurses conferred and decided since Barry was eating 100% by mouth to not reinsert as he was close to end of treatment -- this proved a good decision. If it had been just a matter of "sticking it back in" he would have done that but didn't want to go through the whole procedure again.

Gail

Well hopefully this will be the last time they will have to "monkey" with the thing. Just curious-since they had to go down and disrupt the healing in the throat-do you think they will delay the prognosis scans even longer now?

Gail-I am so impressed at how well you husband did with his treatments. It is amazing what a difference in people's treatments and how they weather it. I have been following your story since I have been on the board and I am amazed! You also seem to be so on top of the entire situation. He is lucky to have a wife like you-so completely involved. Do you have a medical background?
Tami

Hi Tami --

No, I do not have a medical background but I am a research biologist by training (marine micobiology) and was at U. MD biotech Institute for some years. I think this made it easier to research stuff and to ask questions, also doctors do not intimidate me.

On the PEG issue -- I was interested to hear from someone who is just starting her treatment at Hopkins that they put in a PEG, then a week later, after the failures) took it out and replaced with the "button" that's been mentioned on this forum.

Barry does have to work at eating as his throat is sore and inflamed. He's been using his gargles and being careful with timing pain meds and so far has been doing well, but it is not easy. Soft or liquids only for now! I am encouraged at how well some are doing that are a few weeks ahead of him, so keeping fingers crossed!

Gail

Oops, I see that came up as "from coops1939" - which is Barry -- guess he was on just before me and forgot to log off --

It wasn't from him -- it was from me, sorry...!

Gail

Hi,
I have been on the prg for over four years now and have not had any serious problems till date. Yes, I have had the experience of the baloon bursting and the peg popping out without my even realsising it. I recall one day when I noticed my t.shirt was all wet and thought the end from where the feed is - had opened - but to my horror - my t.shirtn was all blood - and I was a long way out from home or the nearest hospital. Unfortunately in our Country - pegs are very expensive and hence very difficult to come by. In Delhi where I live there is just one importer of the pegs and luckily as he knows me - he always keeps a peg or two handy - but it takes a good four to five hours to deliver.I had to drive back ( I do drive ) with my one hand holding a towel to the wound and the other for changing gears and handles the steering - a nightmare. Anyway - all things worked out ok. What I am trying to explain is that even if the peg does come out - it need not be an emergency as it takes time for the stoma to close down and especially in the developed countries problems such as we have are almost non existent.

As for Barry - I am truly happy that the docs do not feel the need to reinsert the tube and will be able to feed normally.

Ananthshenoy, You are an inspirition. I really admire your stamina and strenght. Hope things will continue to go go well for you. Thank you for sharing here. Amy